I've recently been diagnosed with adenomyosis as well as Endo. I've got a few things wrong Endo which was removed from everywhere including bowel and bladder in March this year and I've got interstitial cystitis and my bowel has collapsed since my Endo surgery in March.

I kinda know now what pain is associated with which condition. My gastro and urologist are sorting my interstitial cystitis and collapsed bowel out with more surgery.

My main problem is the Endo and adenomyosis. I cannot take the contraceptive pill as I come out in a rash and hives, I've tried them all. I've had the implant in my arm which makes me bleed lightly every day and doesn't help the pain. I've tried zoladex but my mood swings, hot sweats and amnesia was not great so I stopped that a couple years ago. My gynae consultant suggested trying the marina coil to try stop the Endo growing back and stop the adenomyosis getting bigger but I cannot even use tampax anymore and sex is almost impossible so I really don't want to have the coil at the moment. So I'm just wondering if anyone has Endo and adenomyosis and what helps them with the constant period type pains. I'm really struggling at the moment so any advice would be fab.

Here's a list of the meds I take every day

Co-codamol 30/500 8 a day

Tramadol 50mg 6-7 a day

Liquid morphine







Multi vitamin and mineral

Vitamin d

Vitamin e with rosehip and bioflavonoids


B complex

Any advice would be great. I'm sick of feeling like a 31 year old stuck in 91 year old body

I've been going for a full body massage every 3 weeks but nothing seems to help anymore

9 Replies

  • Hi there I'm 30 and was diagnosed with severe Endo 5yrs ago 2 months ago I had my 5th lap and was also diagnosed with adeno as well my uterus has doubled in size my gynecologist has put me on a progesterone tablet its not a contraceptive pill just pure progesterone he only put me on a very low dose has I told him i don't cope well with hormones was terrible on the pill and zoledex and I don't want to try the coil either on the low dose Iv had a very light period but pain still intense but other bad symptoms so far I'm due to see him in a few wks so he may increase the dose I just want this pain to go so I can totally relate to you can u take progesterone as its not a contraceptive pill might not affect you xxx

  • Sorry no other bad symptoms x

  • Gosh so sorry to hear about all your problems and how much pain your going through... have you heard of dr ashwini trehan a private endo specialist who can remove all your endo without removing major organs? Look him up for long term solution. I myself suffer from endo have done for years - finally going to see him tomorrow.

    Or try a homeopath..someone who can give u meds made from natural plants and oils so you dont have all those side effects. X

  • I contact him for an appointment can you're me know what you think of him - they quoted me £15k before even seeing him that would include everything. - 350 for consultation a I have endemetrosis and I am in pain - I am on my second injection to see if it helps but is r hasn't so far

    have you tried the injections yet or been offered?


  • Hiya, im so sorry to hear you're in so much pain. I have endo and adeno, I have the coil and depo injectionI'm at the moment but have an appointment on Thursday to add or change something as I've started getting some bowel pain again.

    I'm the same as you in that I can't use tampons any more and am completely off limit for sex! But the coil really did help to dull the pain I was in, it actually stopped it for about 3 months, I know it's not for everyone but really worked/ works for me! You can ask them to numb you or knock you out to have it put in (I had it after a lap).

    Hope you get some help soon


  • So sorry you are struggling so much! I know how frustrating it is when it feels like nothing is working. I was also diagnosed with both endo and adeno at the end of August this year. So far, the only thing that has helped me was the mirena, however if you do decide to have it, I would demand gas and air or a local anesthetic because insertion can be very painful, which is understandable if sex and tampons are very painful which is the case for me as well.

    I am having the depo at the moment, and if that doesn't start working soon, I'm going to have to try the temporary menopause thing.

    Have you ever tried acupuncture? I have it weekly and it helps. At the very least it means that I take fewer painkillers on the day that I have treatment and I leave feeling nice and relaxed.

  • Hiya.sorry to hear how bad your situation is. Your pain meds list is crazy!

    I have had reflexology and found a slight bit of relief with that - even if physiological or not, only subltle but it makes sense how reflexology works so can't see why not and the same with acupuncture.

    I also took a natural herb called serrapeptase and it's an enzyme made from silk worms that lives off scar tissue, after about 4 weeks I noticed a positive improvement in my period. However, I was due to start Prostap which I a due to have 3rd injection on 27th this month.

    Mirena didn't work for me, kept at it 5 months. Zoladex made me feel absolutely awful - so bad (a few years ago) hence Prostap with HRT. Since adding HRT I have definitely had a bit more discomfort which is to be expected given its putting esteogen backin. I did have an 'attack' as I call it this weekend and it was vile but lasted less time and was slightly less aggressive. I also get more pains and niggles as mentioned but if this is the worst compared to normal - I'll take its ill probably opt for the hysterectomy. So I would suggest discussing Prostap as an option? I can only give you my experience and it's not for everyone. I was worried sick about another menopause but whilst it isn't great - it hasn't been that bad overall v's pain.

    Best of luck x

  • You poor thing, I had adeno and have endo, I was lucky enough to be diagnosed at 39 and have had my family, so I opt for a hysterectomy, in July, I'm much much better, still not 100% but of the morphine, I've just started taking a Aloe Vera drinking gel, it's regulated me, toilet wise, and it's helped with my energy levels, my pain hasn't changed as yet with the gel, but I've only started it 3 weeks ago, Aloe Vera is a natural anti inflammatory, so it could be beneficial, it's also good at realigning the immune system, if you pm me I can give you more details,

  • Hi Emma,

    for me the coil made the pain worse and tbh I went a little crazy.... I'm lucky I still have a partner. I gave it a good go a year and a half. I too have endo and 3 scans point to adeno has well and I'm having cystitis for two weeks in each month its driving me mad. I'm having a lap done in new year to cut endo away then I'm going to seriously think about hysterectomy. Has for pain now I do guided meditation for chronic pain you can found them on utube. Meditation has been used by ninjas for years to block out extreme pain. You need to be a ninja warrior to have endo I swear .I end up going to sleep but that's good has I don't feel pain. Over time we build a tolerance to the pain killers and then they cause loads of other symtoms so it's a catch 22. I wish I could be of more help but I'm in the same boat big hugs x

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